Uncertain Newbie

Hi! My name is Charlie and over the Christmas period I was assessed for Autism after a few months of pushing.

My family would say I've been searching for a label for a long time. I'm not content to accept that I feel different without understanding why that is. The process started in March/April 2018, admittedly I was still ill with glandular fever, but I watched the Are You Autistic? documentary on catch up and found myself crying my eyes out in the middle of the night. In particular, there was a woman diagnosed with Aspergers who I related strongly to, and I had a strong reaction to the section about women and social masking. I had been doing some research on and off after some of my behaviours led to tension and I wanted to know if anyone else experienced them. This usually consisted of articles, blog posts, official websites, and Ted talks and other videos. A lot of it just rang true I guess. When I took the AQ test I consistently came up with scores from around 31-33. So I went to my GP.

A few months of struggles and chasing later and in November I was in my first meeting regarding the assessment. They even wanted me back for a second session.

In early February this year I got the results of that assessment. I was told I was not on the spectrum according to their criteria. In the long report they gave me they mentioned that some of my traits could be related to Social Anxiety Disorder instead. But along with that 'no' they still told me I had many traits. I simply didn't have quite enough to warrant an official diagnosis. My family are very willing to accept this and any decision I make regarding it but personally I am very conflicted. I am aware of the danger of seeking second opinions until I hear what I want to hear, but to me the fact that I can still have many traits and react so strongly feels odd. It seems like I've gone from just over the bar to just under it. Part of me knows that's possible but part of me is also sceptical about it.

I feel it worth noting somewhere in here that some time after my first assessment I met someone who is now my partner. He was surprised to hear my concerns but also understood the traits I described and the concept of social masking. But he also did say I didn't seem like others he's met who are on the spectrum. (Another note, a friend of mine when I was about 12 had a younger brother with Aspergers. The friendship broke down in part because I would get along so much better with him than with her, and this is extremely unusual for me. I also have a younger cousin about 6 who is also currently being assessed. I got on with her extremely well, better than the cousins on the other side. Not diagnostic I know, but very interesting I feel.)

I was wondering if anyone had any comments or advice regarding this as I don't have many people to go to. The few people that I have spoken to outside of my family also think its a strange thing to be told and would encourage me to get a second opinion. One even suggested that if I do relate strongly then maybe I should take my own gut feeling over 'not quite making the grade'.

Parents
  • I would probably go with my gut feeling whilst also seeking a second opinion.  

    Like you, I related very strongly to some aspects of autism shown on that documentary.  If you've had a look at the Futurelearn MOOC on Understanding Autism, there's also a lady on there who was diagnosed later in life and whose experiences sounded all too relevant to me.

    Do you still have the chance to ask questions regarding the result of your assessment or has that door now closed?  I'm asking because, if I'd not received a diagnosis, 2 questions which I had at the very top of my list were:

    How do you adjust the assessment process to reflect the ways in which autism presents in women?

    and

    Do you make any allowances for the years (possibly decades) of coping strategies, including very heavy masking, that have developed as I've been growing up and doing my best to make my way in the world?

    You might, of course, have more questions of them.  But, depending upon their answers, this might bolster any decision about seeking a second opinion.

  • I’ll have a look at the paperwork! They did say they would continue to support me and to go back if I had any questions, and I will admit I didn’t ask these. I didn’t think of them. In all honesty that last meeting where I did get the report was just overwhelming and uncertain for me. I didn’t know what to do and having everyone looking to me was making me very uncomfortable. 

    Thank you for the advice!

Reply
  • I’ll have a look at the paperwork! They did say they would continue to support me and to go back if I had any questions, and I will admit I didn’t ask these. I didn’t think of them. In all honesty that last meeting where I did get the report was just overwhelming and uncertain for me. I didn’t know what to do and having everyone looking to me was making me very uncomfortable. 

    Thank you for the advice!

Children
  • Ah, if there is paperwork and the offer of continued support that's great because it leaves you with more options.  I have to admit, I'd probably take a copy of the report (to preserve the original for other purposes) then go through it with a highlighter pen and also make notes in the margins.  I'd probably want to probe a bit on why they felt I didn't quite meet the criteria and what sort of thing would have made the difference because it may well be that there are some things that somehow weren't mentioned or brought out fully which fall into that gap. 

    And yes, the diagnostic meeting can be overwhelming and it's hard to prepare for the emotional aspects.  At the time i strongly felt that the Autism Team should have sent out the report in advance so that I could prepare myself and think about what I need to ask.  Apparently they just don't do it that way and it has to be a face to face.  So I prepared "yes" and "no" lists and went in with those.  I did the best I could but when it came to it and they simply said, "Yes, we will be making a diganosis of ASD today as you do meet the criteria.  Any questions?" my first involuntary response was for my eyes to well up so's i couldn't read my list!